Friday, May 7, 2010

Why a disease made me the mother I am today

When I first fell pregnant, I initially dismissed my aches and pains as pregnancy symptoms. Then I was hit with the devastating news – I had rheumatoid arthritis. Despite the daily pain, I am having another baby and have written this story about my difficult path and why I have chosen it

Birthdays can come and go as far as I’m concerned, but Mother’s Day is a reminder of what’s really important in my life.
The day I became a mother, I remember thinking very clearly that from that moment on, my life had a purpose. My reason for being came when my daughter was born.
To anyone who doesn’t have children, this probably sounds ridiculous. Of course, all life has a purpose whether you’re a mum or not, and being a mother shouldn’t define you.
But this profound, life-changing event really has shaped the person I am today because it also uncovered a hidden autoimmune disease.
The first signs of my illness started when I was nine weeks pregnant with my daughter in August 2005. I had a pain in my shoulder which I thought was from playing tennis, but it spread to my other shoulder, my knees, hips and wrists.
I thought it was “normal” pregnancy aches and pains, so I tried physiotherapy and acupuncture, but it kept getting worse. My doctor tested me for all sorts of exotic diseases thinking I may have picked up a virus, but tests kept coming back negative.
At 20 weeks pregnant, I was referred to a rheumatologist who confirmed I had rheumatoid arthritis (RA).

It came as a huge shock, as this was supposed to be a hereditary disease, and as far as I knew, no-one in my family had RA.
I also still believed my pain was related to my pregnancy and would simply “go away” after the baby was born. But it was worse than anything I had ever felt before, and it was constant.
I remember laying in bed at night feeling like every joint in my body was being crushed, from my jaw bone to my toes. It was painful to walk, painful to eat, painful to write with a pen. I couldn’t dress myself, shower or go to the toilet without assistance.
My husband became my carer until I was put on to corticosteroid medication which helped ease the pain. I had an otherwise smooth pregnancy and birth, but after a few months I could feel the steroids having adverse affects and my joint pain was becoming worse.
I weaned my daughter from breastmilk to formula, started on a disease modifying anti-rheumatic drug (DMARD) and spent many months coming off the steroids.
A year later and I felt like my old self again, almost pain-free and active, and totally immersed in being a mum.
But in order to conceive again, I would have to stop all of my medications as they could cause birth defects. So it was with mixed feelings my husband and I decided to stop my drugs in September 2007. We wanted so desperately to have another baby, but were worried that my RA would return.
I count myself as one of the lucky ones who respond well to treatment, and amazingly, my RA didn’t come back. Instead I enjoyed two years of remission – not everyone with a chronic illness wins the lottery like I did.
But during that time, my husband and I were faced with unexplained secondary infertility.
It took two years, and one miscarriage, before we finally got pregnant.
I was so elated with the news, I put my RA very far in the back of my mind. If it flared again, I thought I could handle it, I knew what I was in for, and I could better manage the pain.
It did come back, this time worse in my hands than ever before, and also in my feet, knees and hips. By February this year I was a mess both physically and emotionally and was not coping.
When you cannot even hold a plastic cup of water in order to take a couple of paracetamol tablets, you know the battle has been won by the disease and it’s time to see a specialist.
I had stubbornly left it very late to see my rheumatologist, who put me on two different types of medication to get me through the pregnancy, but it took another two months before the joint swelling went down and for the pain to be manageable (I say manageable because it never goes away – I am in some degree of pain every single day).
The ignorance and misunderstanding of arthritis is astonishing. I am a young woman who looks healthy and this causes a lot of confusion for a society who thinks arthritis only exists among the elderly.
I’ve often had people say to me: “Oh, I have a bit of that”, when I tell them I have arthritis. I feel like saying: “If you have what I have, you wouldn’t act as it if was no big deal!”
I am frustrated by people who suddenly turn into doctors giving you their “cure” for arthritis (as if I haven’t bothered to research ways to treat my disease).
“Stop eating tomatoes, try magnets, drink epsom salts, and are you taking glucosomine?”
The fact is there are about 100 different types of arthritis, and if these simple “cures” actually worked for everyone, then my rheumatologist would be out of a job. I’ve tried many “natural” remedies, but the only thing that has helped relieve my pain over the long term is prescription medication.
RA affects not only your physical body, but has an even greater impact on your state of mind. Depression, anger, self‑pity, frustration, anxiety, fear, sadness... I’ve been through it all.
When my energy is zapped, I can no longer bother to heat up wheat bags or do some gentle exercise to keep my joints moving. Boredom and loneliness take over and at these times, I’ve never felt so isolated.
I’m sure my parents (who live a long way from Cairns) are unaware of the full extent of what RA does to my body and mind. But my husband Jean has lived with it from the start.
The toll on him can be just as difficult as he becomes responsible not only for working, running the household, caring for our daughter and caring for me, but coping with his own emotions.
My arthritis also has an effect on my daughter.
She understands that Mummy has sore hands and has to do some things differently.
Laura loves being “mummy’s helper” and opens milk, juice, bottles, jars and Tupperware, that I simply cannot, as well as helping me with the cooking, folding, washing and so on.
Parenting takes a lot of time, energy, patience and love, and raising children is the most challenging and rewarding job there is.
But raising children when you have a chronic illness is a big hurdle; one that just takes some creativity and patience.
I have often felt guilty about how my illness affects my daughter. She is very observant and has been through stages where she does not want to leave me because she wants to take care of me.
While most children like to actively play with their parents, when you have a chronic illness this is almost impossible. But quality time with them can still be achieved.
I find it very difficult to sit on the floor, so we will sit on the bed or the couch, and read books, colour-in, play cards or puzzles, or musical instruments.
I feel ashamed that my four‑year-old has, at times, cared for me instead of me caring for her, but if nothing else, she has learnt kindness, patience and compassion towards others at a very early age.
Even though RA is hereditary, there’s no guarantee that my children will turn out like me.
I’m hopeful that if something does trigger RA in my children, it is many years away and better treatments, or even a cure, might be available.
Many people make the assumption that I would not want to have another child because of the pain I endure, and certainly many assume that my current pregnancy will be my last.
As one colleague put it: “Why are you not tying your tubes in horror of the pain that comes with the pregnancy?”
Call it maternal instincts, but the urge to have children is probably the strongest inner desire I have ever felt, and it cannot be ignored.
The reward for the past nine months of pain is a beautiful baby, and my motto is: “Keep your eye on the prize!”
In truth, my pregnancy is short-term pain for long-term gain.
I have never been discouraged by my support team of doctors, family and friends to not have any more children but I know of other parents with chronic illness who have been told to get a dog instead!
I don’t ever want to let arthritis dictate what I do in life, and that means if my husband and I want more children then there should be no reason why not.
I can truly appreciate what I have got, knowing there are many women out there who would do anything to have a child. And in that sense, we will never regret the children we have, only the ones we don’t have.

RA facts at a glance
  • Rheumatoid arthritis affects almost 500,000 Australians and is the second most common form of arthritis (after osteoarthritis).
  • RA affects men and women, but women are more likely to develop it than men.
  • It is an autoimmune disease, meaning the immune system attacks its own body tissues. Other organs of the body can be affected as well as the joints.
  • The peak age of onset is 35-45 years – a time when people are most active in their workplace or taking care of their family.
  • The main symptoms are pain, swelling, morning stiffness, fatigue and limited movement of the affected joints. Symmetrical hand (both hands) effects are also a prominent feature.
  • The underlying cause of rheumatoid arthritis is not well understood but genetic factors play a key role (smoking can also increase the risk).
  • Rheumatoid arthritis is a major cause of disability and psychological distress. It also has a serious impact on a sufferer’s family.
  • The disease reduces a person’s capacity to work. Only 31 per cent of those affected were in full-time employment in 2004‑05 compared with 53 per cent of the general population.
  • An individual’s treatment depends on how far the disease has progressed and what treatments he/she responds well to and can tolerate. Until recently, nearly 30 per cent of people did not respond well to, or could not tolerate, standard treatment for severe rheumatoid arthritis. In patients who remain symptomatic, their doctor may consider different combinations or different treatments.


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